Jim’s story
I had my first blackout over 10 years ago. It was nothing too traumatic: I think I was more confused than worried about what had happened. I soon started to have more attacks and their frequency and extent seemed to get worse. I was a young and very fit man, I played badminton, cycled, worked out in the local gym and was no mean sprinter. I was also a parachutist and an advanced scuba diver – something for which I had to have a full medical every 3 years, including a chest x-ray.
The attacks came to a head when I was swimming in the club pool one night. We had to swim 20 lengths of the pool each week just to prove dive fitness, and once this was out of the way a group of us would continue some serious competitive swimming.
It was during one of these lengths that an attack started. I always got a warning (and still do): a high-pitched ringing in my ears followed by tunnel vision. Usually if I stopped what I was doing immediately it would pass as a light-headed spell, but on this occasion it really meant business!
I remember waking up at the bottom of the pool, having started to swallow water. I was still in a dream-like state, and the pool noise was distorted but recognisable. The water was warm and comforting and I remember thinking that drowning was a "lovely way to go".
Then I came to my senses and swam for the surface. The problem with drowning in a diving club pool is that people expect to see people lying on the bottom – it’s what diving is all about! My hasty surface had gone unnoticed and I scrambled to the poolside and headed to the changing rooms. I had no choice but to tell my then girlfriend what had happened and excuse myself from any further diving until I could get it sorted.
My girlfriend happened to have an appointment with her doctor booked for the next day, so I asked her to mention the attacks and get some reaction to them. The outcome was an immediate summons to see my doctor, who after a brief examination told me that he had no idea what was wrong but thought I was having epileptic fits. He said that he would refer me to a neurologist, but that it may take some time before I could be seen.
My appointment came through much faster than I had expected – so much so that it beat my BUPA appointment by 2 weeks. So it was off to Manchester to see the NHS neurologist. He checked me over and told me that it wasn't epilepsy, but might be a heart condition and so he referred me on to a cardiologist.
I saw the cardiologist and had a check-up. Everything looked fine, but to be on the safe side he told me to wear 24-hour tape and return it for examination. Unfortunately, as soon as I put on a tester I have no symptoms at all - they are like a lucky charm for me! But without the tape I was still having blackouts. In a final effort to crack this case he suggested a echo cardiogram. Success – I had hypertrophic obstructive cardiomyopathy (HOCUM).
The treatment was a lifetime of betablockers, but this still didn't stop the blackouts. In fact they had returned with a vengeance, with the small attacks coming more often and the total blackouts lasting much longer. I tried many times to catch an episode on tape – they even gave me a Novacor to trial during its assessment. I should have had it on for 2 weeks but had a phone call to return it after just 5 days. Typically, I had had no symptoms – but in the next 2 days I had 3 more major blackouts.
By this time I believe that the hospital and my cardiologist thought I was faking the attacks, so as a last resort I was booked onto a treadmill. After 10 minutes my pulse rate had hit 185bpm with no signs of any trouble or cardiac distress. My consultant called the test to a halt. As the treadmill slowed down he told me that there was absolutely nothing wrong with my heart (apart from the HOCUM) and that I should see an ear, nose and throat specialist as I was probably losing my balance rather than blacking out.
Still on the treadmill, I was down to a slow walk when I heard the ringing start. I asked them to get me off the treadmill straight away, but they said it had to come to a stop. I told my cardiologist that I was about to have an attack, only to be told that there was nothing at all wrong and that all the traces where normal. The ringing in my ears increased in volume and pitch and my eyesight started to tunnel. I repeated my warning but was told again that everything was OK. As my face started to go numb I heard the ECG start to sound warning noises. I managed an "I told you" before falling off the back of the treadmill.
I woke up with a crowd around me. They helped up to a chair while I regained my senses. There was a flurry of activity and some phone calls being made. I seem to remember that I started to get dressed back into my work clothes. “What are you doing?” asked the cardiologist. “I’m getting dressed to go back to work,” I told him. “Not now I know what is happening”, he said (it was a polymorphic ventricular tachycardia. “You’re going straight to the coronary care unit.”
I had a main line put into my neck and had amiodarone pumped through it for a week. I was told that once the amiodarone was into my system, the arrhythmias would be controlled and I would have another treadmill test. They told me not to worry as amiodarone was the be-all-and-end-all for treatments of arrhythmias, but it did have some side effects that we would discuss at a later date.
Back to the treadmill feeling a bit like death warmed up. The amiodarone did not suit me: I felt terrible on it, but “never mind because it will solve all the problems”. After 10 minutes on the treadmill we knew it would not. Same result as before, but at least it happened at full speed this time and they managed to get me off the treadmill when I warned them – so no floor show, just a spectacular VT trace.
At this point I felt downhearted (no pun intended). My cardiologist gave up and passed me to an arrhythmia specialist who recommended doubling my dose of betablockers and amiodarone. Well, my hair fell out in clumps, my get up and go had got up and gone and I was still having the blackouts. The consultant suggested ditching the amiodarone and I stopped taking the betablockers as I was getting all the side effects and no benefits.
My girlfriend, who by this time had become my wife, caught me not taking the betablockers. She forced a meeting with my consultant who suggested a change of betablockers and a pacemaker. This at least would restore some sort of normal heart rhythm and it could be programmed to cause my heart to beat in a slightly more beneficial manner. When the pacemaker was put in and started I felt warm for the first time in years, it ran constantly at 68 BPM, it would increase my pulse when it detected exertion but would always be playing catch-up. I soon learnt to hate stairs and hills, but it didn't stop the blackouts. It needed a battery replacement after 5 years and this time I was offered an ICD.
The ICD was bigger, better, smarter and newer than a pacemaker, but you lost your driving licence for 6 months once you had one fitted and for a further 2 years if it "went off". I plugged for an improved pacemaker. At least with one of these new ones they may find out what caused the attacks as they recorded incidents.
It was 2 years down the line with my new pacemaker still having the attacks, that I had a "bad weekend". I had a major attack on the May Bank Holiday Monday, followed by another 2 bad attacks while in work. I phoned my consultant and had an emergency appointment with him. He berated me for refusing the ICD and threatened to wash his hands of my case unless I accepted one. I told him that I would strongly consider it but at least he had the data acquired from my pacemaker to make a good clinical decision on the ICD. It was then he admitted that it hadn't been set up to record properly and there was no data available.
Needless to say, my wife talked me in to an ICD and I had it fitted some 18 months ago. I have it checked at clinic every three months and it has to fast-pace 4 or 5 times a quarter to keep me on track. I still have numerous light-headed moments but it hasn't had to fire yet – maybe because I live within a strict set of rules worked out over the years, or maybe because I haven't returned to a very stressful job yet. Who knows? The hospital tells me they don't want it to fire, as they would feel they have failed. I certainly don't want it to fire, as I live in a rural community and my driving licence is very important to me.
I am sorry this has been so long, but it covers my trials and tribulations over nearly 20 years.